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Cort Johnson blogpost - "Recovery Potentially Possible: Naviaux Talks on Chronic Fatigue Syndrome"

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1,446
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Stop talking about 'Chronic Fatigue Syndrome' because it aligns us with people who are tired or burned out/stressed out.
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Some of us do not have enough years left to live to live in 'hope'

Get rid of the bloody psycholgising ... at this stage that alone will save us from further medical abuse.....
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Sasha

Fine, thank you
Messages
17,863
Location
UK
Cort is taking part in the current study. A couple of particularly interesting bits:

Cort said:
Naviaux’s current study is about 50% bigger than the first and will contain roughly equal numbers of men and women. Naviaux will be analyzing his own mass spectrometer results, but in the second part of the study Oliver Fiehn at UC Davis will be implementing Naviaux’s methods on a different mass spectrometer machine. Fiehn’s West Coast Metabolomics Center is an NIH Regional Resource Core designed to advance the use of metabolomics in medical research and other fields. Fiehn is a well-published author who recently co-authored a metabolomics cerebral spinal fluid study which predicted the progression of Alzheimer’s with 99% accuracy.

The analysis for the expanded ME/CFS study should be done by July of next year with the paper published hopefully 4-5 months later.

and

Cort said:
Naviaux doesn’t believe that the kind of structural damage that occurs in say, multiple sclerosis, has occurred in most cases of chronic fatigue syndrome. Nor has any intrinsic damage occurred to the mitochondria of most people with ME/CFS – a good thing.

Naviaux has plenty of experience with genetically determined mitochondrial diseases; he developed one of the first mitochondrial cocktails in the mid1990’s to treat them. These diseases, he believes, are much harder to treat than ME/CFS will end up being.

This is consistent with my experience of a long period of remission (in fact, I thought I'd recovered - it was before I was aware that ME/CFS could relapse/remit) after many years of being confined to bed.

I'm glad Naviaux isn't hanging about and seems keen to crack on quickly with treatment trials.
 

Mary

Moderator Resource
Messages
17,335
Location
Southern California
Haven't read it yet, but bound to be interesting:

http://www.healthrising.org/blog/2016/12/13/22744/

It's very interesting and a little discouraging at the same time. This part, which talks about our bodies basically thwarting off any attempt to return to health, is a little scary to me:

Treatment of ME/CFS is not a simple matter of “replacing what is low and removing what is high”. This is because the body is actively creating and even defending the low energy state of a human dauer-like syndrome to help it to outlast a perceived danger.

I've seen a similar hypothesis before. I've been sick for 18 years with no remission; the only progress I have made is shortening my PEM recovery time, but have not extended my exertion window at all.

But I'm very glad for the research of course - and who knows?
 

lansbergen

Senior Member
Messages
2,512
It's very interesting and a little discouraging at the same time. This part, which talks about our bodies basically thwarting off any attempt to return to health, is a little scary to me:

It does not scare me.

Treatment of ME/CFS is not a simple matter of “replacing what is low and removing what is high”. This is because the body is actively creating and even defending the low energy state of a human dauer-like syndrome to help it to outlast a perceived danger.

I see it as when the danger has subsided health can return.
 

Mary

Moderator Resource
Messages
17,335
Location
Southern California
It does not scare me.



I see it as when the danger has subsided health can return.

I can see your point. It's just I think the "danger", whatever it was, has long since subsided - it hasn't been here for 18 years, but here I am, still sick, with no hope in sight. So the body I guess erroneously believes the danger to still exist but doesn't seem capable of recognizing when it's safe to get well. I'm sure this is what Naviaux is studying - it's just a rather strange construct, our bodies working that way. Or maybe most similar to an autoimmune illness, where the body apparently gets stuck in a different way.
 

Mary

Moderator Resource
Messages
17,335
Location
Southern California
Its a well known observation in ME that treatments can work for a while then stop working. This is consistent with the hypothesis that our body fights the treatment to return to its stable and unhealthy state.

This has happened to me on a couple of different occasions - years ago both NADH and l-carnitine were like magic pills, for about a week or 10 days.....

Obviously it's a good thing to know what's going on and if this is what our bodies are doing, we need to know it. So the research is welcome - but am crossing my fingers about where it will lead us! :nervous:
 
Messages
2,391
Location
UK
Its a well known observation in ME that treatments can work for a while then stop working. This is consistent with the hypothesis that our body fights the treatment to return to its stable and unhealthy state.
So, analogous to an animal resisting coming out of hibernation because its body does not realise it is safe to do so.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I doubt any cure will result in 100% return to health for most of us. New patients, yes. However I think an 80% return to normal health is probably a good ballpark figure for most long term patients. Given I am currently about 30%, maybe, that would be huge. Its not that ME is not 100% curable, I think it is, its that damage from long term ME may not be fully recoverable. In particular I think neural degeneration and vascular remodeling, if present, may not be fully reversible. Yet even in this case at least a cure for ME will halt any decline and allow patients to better adapt without such debilitating exhaustion, pain and brain fog, and with decent sleep.
 

lansbergen

Senior Member
Messages
2,512
I can see your point. It's just I think the "danger", whatever it was, has long since subsided - it hasn't been here for 18 years, but here I am, still sick, with no hope in sight.

The one I suspect is still around. There is no known adaptive response and no known cure.

The innate immunesystem must do the job and when that reacts to strong it can cause symptoms and even kill the host.
 

TreePerson

Senior Member
Messages
292
Location
U.K.
This has happened to me on a couple of different occasions - years ago both NADH and l-carnitine were like magic pills, for about a week or 10 days.....

Obviously it's a good thing to know what's going on and if this is what our bodies are doing, we need to know it. So the research is welcome - but am crossing my fingers about where it will lead us! :nervous:

I have had this with supplements that work for a week or two and then stop. I keep thinking about something my Grandma used to say "Don't wear your coat indoors or you won't feel the benefit when you go out ".
I think it's something like that. So after a while if you wear your coat indoors you would need two coats when you go out. The body starts to accept a coat indoors as normal and adjusts. I think it's the same with supplements. After a while the body accepts the increased availability and adjusts so that you end up back where you were before. Except you have become dependent on an expensive supplement. Well that's how it's been for me.
 

lansbergen

Senior Member
Messages
2,512
Its a well known observation in ME that treatments can work for a while then stop working. This is consistent with the hypothesis that our body fights the treatment to return to its stable and unhealthy state.

The immunemodulator I use still works. Improvement is very slow but lately it accelerated.

That brings me to a question for @Jonathan Edwards. Is there any reason to think protein clumbs other than immunecomplexes can not get stuck in the pleura and pericard?
 
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